Friday, May 22, 2015

This is Part 2 of my week last week. Catch up on Part 1here. Part 3 coming shortly...

A Tribute to Lisa McMillen

In November 2014, I asked the ALSA caseworker at the ALS clinic if there was a support group in the area for young pALS. I have since formed bonds with pALS of all ages, but was (and am) stuck on this idea that DP and I are in such a different place in our lives with this disease -- e.g. while many pALS are grieving the idea of not being around to watch their grandkids grow up, we are grieving that having kids is no longer part of our life's plan.

"No," she said. "But there is a young woman in Arlington who you should meet."

That turned out to be Lisa. I knew we would be friends when her first email reply came back immediately and had as many exclamation points as I use :)

Lisa McMillen, April 2015

Lisa was diagnosed with ALS in April 2014, just before her 31st birthday and less than a year after getting married. She thought my diagnosis roller coaster was worse, I thought hers was. She had her second "stroke"(maybe? some doubt considering what transpired afterwards...) in August 2013. Following a long hospital stay and bathroom remodel (keep in mind she and Sean were still basically newlyweds), her symptoms seemed to be getting worse. So a lot of medical head scratching went on (aka tests with needles and electrodes) and she finally got the diagnosis.

In her first email, Lisa invited us over to her house so that we could see some of her "gadgets" (her term). We discovered all sorts of similarities in our husbands: attorneys...from outside Philly...rowed in college...then triathletes... But the most important similarity is that Sean looked at Lisa the way that DP looks at me. Like he would do anything for her. And did.

What struck me about Lisa was that she was so practical and matter-of-fact about everything. For example, she had a feeding tube put in WAY before she needed it because she knew her body was at its strongest.

Also, she was fearless. Even after the hospital stay, she was still working her beloved job at the GAO and taking the Metro in her power chair...at rush hour...on the Orange line.

I give Lisa a lot of credit for how I've been able to deal with ALS so well. It's hard to whine and complain when this little spitfire is nonchalantly driving in circles around you. "Have you signed up for hospice? You should, they're great."

That's why I was so surprised when I was so sad to learn about her passing on Friday. We all knew it was inevitable, and I'd heard at the ALSA conference that she wasn't doing well. I reached out over text but it was her and her twin sister Kat's 32nd birthday so I figured she was celebrating and responding to an onslaught of birthday messages.

I was so sad and really mad for the first time. Mad that so little has been done to stop this killer. It's funny, just a few days before, I'd just spent hours surrounded by hundreds of pALS listening to explanations of why ALS researchers haven't made more progress. I was discouraged, but I wasn't viscerally sad or mad like this. That beautiful flower got picked just as she was blooming.

(By the way, I take exception to the notion that Lisa "lost her battle to ALS." We may have lost her in this world but ALS never beat her spirit, spunkiness, or sweet smile. She wins in my book.)

Selfishly, my reaction scared me and caused me to question everything. Here I am, inviting people to be part of my journey, to get excited and be inspired, connect and reconnect, to have all these adventures...only to make them more sad at the end?? It crushed me.

Of course, the Team Drea Challengers rallied. I asked them to dedicate a lap or mile to Lisa and immediately got back messages like, "I'm lacing up my shoes right now" and "we're planting marigolds and we'll plant some in her honor like we did for my grandmother" and "my 4+ hours on the bike tomorrow will be dedicated to Lisa." Lauran and Heather honored her in their race reports and Shaw added some hearts for Lisa to her temp tattoo.

Jodi, a Team Drea Challenger whose mom died of ALS 6 years ago, told me that it was okay that it was not okay. Being "not okay" has driven her to keep her mom's spirit alive in telling her kids about their grandmother and to see so much of her mom in herself as she raises them. Being not okay is why she and her sister Jillaine ran their first marathon last year to money for ALS and joined Team Drea. Their mom's passing hurt the family deeply, but it challenged them to honor and remember her.

This does not in any way change my commitment to the Blazeman Foundation. ALS TDI shares a similar mission focused solely on research -- they are a Boston-based nonprofit biotech company that works at the preclinical phase to develop new treatments to slow or stop ALS. Promising findings are sold to pharmaceutical companies that can run the trials and bring drugs to market.

Some people remember that DP and I dodged two snowstorms and the Patriots' Superbowl parade to get to ALS TDI in February. I am participating in their Precision Medicine Program, which means my blood sample and skin biopsy will be used to look for ALS biomarkers and develop stem cells that can be tested with thousands of already approved drugs to see if they can be used for ALS. Every month, I wear 4 motion sensors for a week to measure the activity of my limbs and do a voice recording. This data helps ALS TDI researchers track the progression of my disease.

It seems like too much of a coincidence that I had a meeting about becoming a YFALS on the same day that Lisa died. So I will take this role on in her honor, telling her story as well as mine, and challenging myself to raise MORE money and awareness in this new channel.

And ironically too, maybe I've finally found the support system of younger pALS that I was looking for.

Tuesday, May 19, 2015

I wanted to roll all of last week into one blog entry but I got through Tuesday and realized that was insane. So here's Part 1. Part 2 (and Part 3?) coming shortly...

ALS Conference
On Monday, I went to the ALS Association's national conference, which conveniently is always in DC. I learned a ton from Dr. Lucie Bruijn, ALSA's chief scientist. For a poli sci major/city planner who hadn't had her coffee yet, some of it was over my head -- like this diagram:

...but in general, she did a great job of breaking down the information. Here are the facts that stuck with me mixed with some of my thoughts and takeaways:

What if ALS is really an umbrella? My neurologist said once, "if we put 30 ALS patients in a room, they would all look different. Imagine trying to design a clinical trial for that." I believed her, but didn't really get it until I saw it for myself with hundreds of pALS at the conference. There were people who couldn't move their legs (or arms, or either), but could talk completely normally. There were people I assumed were caregivers because they were walking around just fine, but then they'd speak and it came out as a croak. And everything in between. People on respirators, people controlling computers with their eyes to speak. Old people, younger people. A cross-section of races and ethnicities...

Dr. Bruijn spent a lot of time on "why drugs fail." Is it because they're ineffective? Or is it because they're tried too late, when the person is too ill to make a difference? Or is it because the person has a different genetic mutation? (so far there are ~30 possibilities identified)

Or is it because researchers are lumping everyone with all these diverse symptoms and rates of progression into one disease and the same clinical trials?What if "ALS" is actually an umbrella term, like "cancer"? So instead of brain cancer, breast cancer, bone cancer, prostate cancer, etc, they're basically trying to find one drug to cure cancer. Oh geez.

Drug development is expensive. Dr. Bruijn estimated that it could take $1-2 billion to get an effective ALS drug to market. The ice bucket challenge raised $119 million for ALSA and that's not all going to research. Oh geez.

Still, IBC mattered. Researchers have had theories and hypotheses for years, but not enough money to get started. The ice bucket challenge fundraising means that the most promising clinical trials are now moving forward.

DoD research funding is where it's at. Veterans are TWICE as likely to get ALS as the general population. Why? No one knows. DoD has an ALS research program, which has received $46.9 million since 2007. Interestingly, DoD also has a breast cancer research program, which has received $3 billion since 1993. It started with supporters hand delivering 600,000 letters to their congressional representatives.

I am not knocking funding for breast cancer research -- quite the contrary. Look at the progress in breast cancer research and treatment over the past decade. Not only thanks to DoD's program but you get the point: funding = research = breakthroughs = lives saved. You'd think that a guaranteed fatal disease that veterans are 100% more likely to get would have some more attention and funding. But that's Congress...or more accurately, that's what lobbying efforts can do in Congress.

ALS Advocacy Day on the Hill

...which leads me to Tuesday. On Tuesday, pALS, caregivers, family members and supporters took Congress by storm. Which for me entailed three 20-minute meetings with congressional staffers. (Oh geez.)

Not to be too flip. I was impressed with the staff we met from Senator Barbara Mikulski and Rep. Chris van Hollen's offices (my Maryland reps). They had met with the local ALSA chapter folks recently, remembered the issues, and genuinely seemed to be listening.

Basically, the meetings went like this: I was in a group of six consisting of our leader (a volunteer advocate whose first wife died of ALS last year, his new wife (married on Saturday!), two women who lost family members to ALS, one ALSA staffer, and one pALS (me). Our leader, Steve, would cover the basics of ALS (3 min), we would go around the table and tell our stories (5-7 min), Steve would present ALSA's legislative priorities* (5 min), and the staffer would ask questions or talk about what his/her boss has done to support ALS legislation (5 min). Then we would close the meeting and leave behind materials (I slid in a copy of Endurance magazine :) ).

[*Legislative priorities, if you're interested: Continuation of the same $20 million as funded last year ($10M for the CDC registry of pALS, $10M for the DoD research program mentioned above), support for "dormant therapies" that would extend patents for promising medical compounds to incentivize industry to develop them, and support for the Steve Gleason Act to fix some incredibly stupid policy decisions by Medicare (which passed the Senate 99-0, yet to be taken up in the House)].

While I think our little group did a good job, it was hard to feel impactful. We were part of a "fly in day," insider speak for causes like ours descending on the Hill on one day for these 20-minute meetings. We were sharing our fly in day with the American Heart Association, at least, if not others. I'm sure they had just as gut-wrenching stories as we did. And that's just one day in the life of Congress.

On the other hand, it was better than not being there. And it was something I could do when so many other pALS can't.

My overall takeaway from this experience? After it was all over, I felt every bit of the Blazeman Foundation's tagline: "So Others May Live." Waiting on a miracle drug when Phase I clinic trials are just starting...waiting on Congress...it was just...depressing.

But I feel more passionately than ever about Team Drea's focus on fundraising for research to find a cure for ALS. Advocacy is important, assistance to offset the financial burden of ALS is important, but research is the only way to get off this crazy ride for good.

SO much more happened last week -- I was asked to be an ALS ambassador, a friend's passing, a reunion of friends from high school, and Team Drea at Ramblin' Rose Raleigh. Stay tuned!

Okay, I admit it. I just donated $19 so we could hit that number :) Can you believe it?!?!

About a month ago, my friend Carissa was training for her first half marathon for the Team Drea Challenge (which she also did on Sunday! So proud! Guest post forthcoming...) and we decided to see if I could keep up with her on an 8 mile run. I did, it was fine, and so we made a fun weekly date out of it with progressively longer distances, all the way to 10.

I've also been triking with my speedster friend, Ashley, and DP on various runs this spring for shorter distances at slightly faster paces and those went okay too.

So about two weeks ago, Ashley and I signed up for the Coastal Delaware Half Marathon. We chose strategically: flat, not too big, not too far away timewise or distance wise. But the main criteria was FLAT. And would accept a trike, which the CoDel graciously did. DP signed up for the 9k and Ashley's husband, Doug, graciously agreed to take photos and take care of their kids.

Pre-Race:

2:30pm Saturday: DP gets exasperated when my iPhone directions tell him to make a U-turn...for the third time. I am cracking up too hard to tell him he turned early...again ;)

3pm: Packet pickup opens and the first table we see has a TRIKE on display. So we go over and learn about Preston's March for Energy. Preston's mom, Deb, tells us that Preston has Mitochondrial Disease, which leads to low muscle tone and developmental delays. They received a donated adaptive bike in 2011 and pledged to pay it forward by raising money for other children with disabilities to have bikes of their own. I love this.

We also meet the race director, Rick, who couldn't be nicer and says, "anything you need, let me know." Perfect, thank you! I think of Amy, the RD at Ramblin' Rose Chapel Hill who promised me she'd put the medal around my neck no matter what time I came in...

4pm: DP, Ashley, her 11mo daughter, and I take a slowwww walk on the beach. I try out my trekking poles, which goes okay but they sink in the sand. One fall (oh, I love how forgiving sand is!) and a sneak attack by a wave, but it's always worth it to see the ocean.

6pm: Protein/carb dinner, Asian-style. There's a live band, which mesmerizes Ashley and Doug's 3yo son. He stood in front of them long enough that a band member gave him drumsticks and he beat on the stage right along with the music. It was both hilarious and heartwarming to watch :)

9pm: Fall asleep watching the first Hunger Games and trying to channel Katniss...3am: Wake up happy that I actually had a good night's sleep before a race...only to realize I have 3 hours left before the alarm. I'm too excited to sleep.6am: Bounce out of bed knowing how long it takes me to do anything, then realize how easy running races are to get ready for compared to triathlons. Am sitting around by 6:20. Ashley comes over and double french braids my hair and we're off.Race:Good thing we left when we did! It's more than a mile to the race start. I love hearing the blaring pop music...it's just one of those mainstays of every race. Once we get there, we only have time to grab more pins, take a couple of photos, and then RD Rick says it's time to start. They're launching Deb, Preston, Ashley, and me first.

The thing about starting in the front is that you're inevitably going to be passed...a lot. It didn't matter though. We race alongside Preston and Deb for awhile, getting to know them and listening to Preston's music. We cheer on the leaders as they pass us, but when the pacer packs start catching up, Ashley and I pull ahead so we're not too wide abreast.The morning is as beautiful as coastal Delaware is flat. I'm so grateful for both and as the miles pass, I gain more confidence that I can sustain our pace, which Ashley tells me is around 9min/mi. We're both kind of surprised and keep checking in with each other -- "are you okay?" Ashley doesn't want me to overdo it and I don't want to ruin her 5k next weekend...she's a rockstar runner but hasn't been training for a long distance race. Mutually reassured, we keep going.A couple of people (like my mom) asked what I think about during races. Of course, I thought of Jon Blais, the Team Drea Challengers, and how DP was doing in his 9k, but I wasn't overly reflective this time -- I was just grateful. I didn't have to think about being grateful, I just was. With my whole being. I wasn't struggling, I wasn't worried, I was just having fun feeling like a normal competitor once again. The longer we're out there, the more I realized how much strength I have left. And believe me, I am grateful for that.

Around mile 9, Doug joins us with the double jogging stroller. Poor Otto wanted his mama so badly and couldn't understand why Ashley wouldn't stop running and pick him up! I know she was torn, but I thought it was too sweet.With less than two miles left, Ashley takes over the pacing and we step it up. We are limited to the shoulder of the road though so Ashley started clearing the way -- "on your left, bike coming through!"Barreling down the finish chute at full speed and seeing DP (surprised to see us already!), I am just happy. Wholeheartedly happy.Time: 1:55:36 (8:49/mi)

Post-raceNo doubt, the best part about racing is the brunch afterwards. We showered and headed out to Rehoboth Beach to try to escape the rest of the runners. Yelp led us to a great down home kind of place where we didn't see anyone who looked like they had just come from the CoDel. The food and the coffee (cofffeeeeee!) were fast, delicious, and definitely hit the spot.DP also had a great run. He was using the Garmin for the first time in a race and it kept him from going out too fast. The 9k had kind of a weird start where the race officials held them to a walk even after they crossed the timing mat, which threw off his splits a bit, but he still finished in 51:30 (9:13/mi)...and missed a medal by 18 seconds!! And was less than 3 minutes behind first place!! He's still smarting from what could have been...and I'm all like, man, does he have a great coach or what?!?! ;)Post-post raceOn the way home, I kept having flashbacks to the summer of 2013 -- before ALS, when I could still dream big. The truth is, I've worked so hard to accept what the doctors and literature all say is my inevitable decline that I didn't realize how strong I still am. I definitely still have symptoms, but I have built muscle this spring. While I was on the diagnostic roller coaster, I listened to the doctors and stopped exercising and where did it get me? I lost all the muscle I'd built from training for the 70.3. Who knows how long it'll last, but does it matter?

From this week's care package, thanks Linda!

I'm not Jon Blais, there's no Ironman in my future. But I still PRed that half marathon on Sunday by 11 minutes. Triking to running is not a perfect comparison, but the point is that I can still do it. Now. And I have a whole season ahead of me...let the race planning begin!I want to say thank you to Ashley and Doug for this weekend, but not just for this weekend. You reappeared in our lives and have become an indispensable part of them. We are grateful for your friendship and look forward to future "trunning" adventures!